tag:blogger.com,1999:blog-88248281139831893912024-03-27T19:53:12.247-04:00Despite LupusLiving Well with a Chronic IllnessSara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.comBlogger1541125tag:blogger.com,1999:blog-8824828113983189391.post-41235290836748639642024-03-06T14:00:00.009-05:002024-03-06T14:13:08.816-05:00Lupus and Coffee: Where do I stand on caffeine?<p><span style="font-family: inherit;">I thought I had my stance on caffeine locked down: poor stand in for valuable sleep, can be detrimental to clear thinking, and brings unpleasant jittery side effect.</span></p><p><span style="font-family: inherit;">But this multi-tasking, busy mother of two teens and small business owner who is forever short on time...isn't so sure now. </span></p><p>Know that I've never been a caffeine drinker. I had the occasional caffeinated soda or cup of coffee in college, but never got used to the sweaty palms or restless feeling caffeine gave me. So I avoided the stimulant and always chose decaf - herbal tea mostly, but coffee and sodas, too. </p><p>Even in my worst bouts of <a href="https://despitelupus.blogspot.com/2012/10/my-lupus-fatigue-defined.html">debilitating lupus fatigue</a>, I never turned to caffeine for help. I had enough <a href="https://despitelupus.blogspot.com/search?q=prednisone">trouble sleeping while on prednisone</a> that I didn't want to complicate things. I've even done multiple <a href="https://despitelupus.blogspot.com/search?q=caffeine">posts about caffeine</a> and why I don't drink it. When I went back and <a href="https://despitelupus.blogspot.com/2010/11/caffeine-free.html?m=1">read this old post here</a>, in particular, I remembered what a strong case I'd built for not drinking caffeine. </p><p>Until recently. </p><p>My two girls have adopted the latest teen trend of seeking out a chain coffee shop wherever we go. Chai tea this, bubble tea that. If it's creamy and frothy with two pumps of white chocolate whatever, they're in. I've concluded that the sweet drinks have too much sugar and creamer (that's another other post entirely), but I really don't like over-paying for herbal tea. So I've been getting a latte, cappuccino, or americano with a splash of cream. I started out asking for decaf...but my order has slowly morphed into regular, fully caffeinated coffee. </p><p>Uh oh. </p><p>Interestingly, gone are the sweaty palms and jittery feelings of years ago. But, hello to energy boosts and eyes wide open! The first day I ordered regular, the girls and I left the coffee shop, and I promptly drove next door to the gas station, where we vacuumed out the entire car. Next stop? Lowes, to get interior car wipes. And then we proceeded to wipe the whole interior down in the parking lot. Boy, mama was on fire! Car overhaul, check. And it wasn't even on the day's agenda. </p><p>One cup of Joe and this gal got a jolt I never knew I needed. </p><p>Now - I know a cup of delicious, steaming hot coffee enjoyed with my girls is a poor stand in for a sufficient nap.<span face="sans-serif"> I know it's a dangerous habit to get into the habit of, or come to rely on. But it's hard to pass up. </span></p><p>Does it take the place of my nap <i>entirely</i>? No. </p><p>Does it reduce the <i>desperate</i> need for a nap? Sometimes. </p><p><span face="sans-serif"></span></p><p>Does it give me the pep I need when my nap has been cut short for whatever reason? You bet. </p><p><span face="sans-serif">In fact, part of this blog post was composed after an 8am cup of half-caf coffee, that then allowed me to shorten my nap, finish the post, and still arrive early for carpool. Is that sooo bad? Am I inviting trouble? </span></p><p><span face="sans-serif">The question is: how much daytime sleep do I need to stay healthy, and how much fatigue am I masking with my cup of coffee? Will that masking hinder me in the long run? Will the fatigue build? Will a flare ensue? Will I get addicted to the caffeine and not want to function without it? </span></p><p><span face="sans-serif">I'm going to have to keep you posted on all of the above. I need to go take a nap. Or refill my coffee cup. </span></p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-23820811363679315712024-02-22T22:40:00.000-05:002024-02-22T22:40:04.608-05:00Lupus and Sleep: Renaming a Nap <p><span style="font-family: sans-serif; font-size: large;">By mid afternoon today, I was feeling pretty crummy about my productivity. I'd been particularly tired (probably from three late nights over the long weekend), and I had needed two naps - one from 8:30-10:30a, and another for about 45 minutes this afternoon. When I made a mental list of the things I'd accomplished, it felt like I'd done next to nothing. Here's what I came up with: </span></p><div dir="auto" style="font-family: sans-serif; font-size: large;"><div dir="auto"><br /><div dir="auto">Got kids off to school</div><div dir="auto">Napped</div><div dir="auto">Finished a podcast</div><div dir="auto">Worked Out</div><div dir="auto">Napped <i>again</i></div><div dir="auto"><br /></div><div dir="auto">But then I thought - what if I said, "Managed lupus fatigue" instead of "Napped"? Would that change the way I felt about it? Would it appear to be a better use of my time? A more productive activity to me? </div><div dir="auto"><br /></div><div dir="auto">What if my weekday to-do's included "manage fatigue" from now on? And on weekends - when I'm calling out to my family that I'm heading upstairs to nap - what if I said, "Okay, guys. I'm off to manage my lupus fatigue. I'll be back when I'm finished"? </div><div dir="auto"><br /></div><div dir="auto">I think I'd feel better about myself. I already <i>do</i> feel better about myself! And I'm writing this blog post about it, so now on my list of accomplishments, right after "managed lupus fatigue for a second time", it says, "wrote a blog post."</div><div dir="auto"><br /></div><div dir="auto">I'd call that productive, indeed! </div></div></div>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-31069221082621840162024-02-14T10:57:00.000-05:002024-02-14T10:57:08.719-05:00Lupus and Nutrition: Brownie Baked Oatmeal Came across this <a href="https://www.erinliveswhole.com/healthy-baked-brownie-oatmeal/">recipe from Erin Lives Whole</a> and thought I would share. This healthy baked oatmeal is delicious - chocolaty and just sweet enough to satisfy the girls. It's great for breakfast, or perfect for an afternoon snack. <div><br /></div><div>I'm always looking for ways to incorporate oats into our diet - they often take the place of flour and I'm loving all the mix ins I can add to make yummy oat granola, oaty protein bites, or healthy oat "cookies" - shredded coconut, flaxseed, chia seeds, or peanut butter. The recipe below incorporates the changes I've made. To see the original recipe, <a href="https://www.erinliveswhole.com/healthy-baked-brownie-oatmeal/">click here.</a> Let me know if you try it! <div><br /></div><div><br /><div><b><span style="font-size: medium;">Healthy Brownie Baked Oatmeal</span></b></div><div><br /></div><div><span face="Sen, sans-serif" style="font-size: 18px;"></span><ul style="box-sizing: border-box; font-family: Sen, sans-serif; font-size: 18px; line-height: 1.45; list-style-position: outside; margin-bottom: 12px; margin-left: 7px; margin-top: 0px; padding: 0px;"><li style="box-sizing: inherit; list-style-type: none; margin-bottom: 10px; padding-left: 0.5em; position: relative;"><span data-amount="2" data-unit="cup" style="box-sizing: inherit;">2 cups</span> <a class="tasty-link" data-tasty-links-append-disclosure="" href="https://amzn.to/2FPtzBM" rel="nofollow noopener" style="box-sizing: inherit; color: black; position: relative; text-decoration-line: none; transition: all 0.4s ease 0s;" target="_blank">rolled oats</a></li><li style="box-sizing: inherit; list-style-type: none; margin-bottom: 10px; padding-left: 0.5em; position: relative;"><span data-amount="0.33333333333333" data-unit="cup" style="box-sizing: inherit;">1/3 cup</span> cocoa powder</li><li style="box-sizing: inherit; list-style-type: none; margin-bottom: 10px; padding-left: 0.5em; position: relative;"><span data-amount="1" data-unit="tsp" style="box-sizing: inherit;">1 tsp</span> baking powder</li><li style="box-sizing: inherit; list-style-type: none; margin-bottom: 10px; padding-left: 0.5em; position: relative;"><span data-amount="0.25" data-unit="tsp" style="box-sizing: inherit;">1/4 tsp</span> salt</li><li style="box-sizing: inherit; list-style-type: none; margin-bottom: 10px; padding-left: 0.5em; position: relative;"><span data-amount="2" style="box-sizing: inherit;">2</span> eggs</li><li style="box-sizing: inherit; list-style-type: none; margin-bottom: 10px; padding-left: 0.5em; position: relative;">3 Tablespoons brown sugar </li><li style="box-sizing: inherit; list-style-type: none; margin-bottom: 10px; padding-left: 0.5em; position: relative;"><span data-amount="0.25" data-unit="cup" style="box-sizing: inherit;">1/4 cup</span> <a class="tasty-link" data-tasty-links-append-disclosure="" href="https://amzn.to/2PFOCZr" rel="nofollow noopener" style="box-sizing: inherit; color: black; position: relative; text-decoration-line: none; transition: all 0.4s ease 0s;" target="_blank">coconut oil</a>, melted</li><li style="box-sizing: inherit; list-style-type: none; margin-bottom: 10px; padding-left: 0.5em; position: relative;"><span data-amount="1.5" data-unit="cup" style="box-sizing: inherit;">1 1/</span>4 cup oat milk</li><li style="box-sizing: inherit; list-style-type: none; margin-bottom: 10px; padding-left: 0.5em; position: relative;"><span data-amount="1" data-unit="tsp" style="box-sizing: inherit;">1 tsp</span> vanilla</li><li style="box-sizing: inherit; list-style-type: none; margin-bottom: 10px; padding-left: 0.5em; position: relative;">1/4 cup peanut butter</li><li style="box-sizing: inherit; list-style-type: none; margin-bottom: 10px; padding-left: 0.5em; position: relative;">1-2 Tablespoons chia seeds</li><li style="box-sizing: inherit; list-style-type: none; margin-bottom: 10px; padding-left: 0.5em; position: relative;"><span data-amount="1" data-unit="cup" style="box-sizing: inherit;">1 cup</span> <a class="tasty-link" data-tasty-links-append-disclosure="" href="https://amzn.to/2USfw2I" rel="nofollow noopener" style="box-sizing: inherit; color: black; position: relative; text-decoration-line: none; transition: all 0.4s ease 0s;" target="_blank">chocolate chips</a> (leave some for sprinkling on top before baking)</li></ul><div><span face="Sen, sans-serif"><span style="font-size: 18px;"><br /></span></span></div><div><span face="Sen, sans-serif"><span style="font-size: 18px;">Mix first four ingredients together. </span></span></div><div><span face="Sen, sans-serif"><span style="font-size: 18px;"><br /></span></span></div><div><span face="Sen, sans-serif"><span style="font-size: 18px;">In another bowl, whisk together eggs</span></span><span style="font-size: 18px;">, brown sugar, </span><span style="font-size: 18px;">coconut oil, </span><span style="font-size: 18px;">milk of your choice, and vanilla.</span></div><div><span face="Sen, sans-serif"><span style="font-size: 18px;"><br /></span></span></div><div><span face="Sen, sans-serif" style="font-size: 18px;">Pour egg </span>mixture <span face="Sen, sans-serif" style="font-size: 18px;">into dry ingredients and stir until well combined.</span></div><div><span face="Sen, sans-serif"><span style="font-size: 18px;"><br /></span></span></div><div><span face="Sen, sans-serif"><span style="font-size: 18px;">Add in peanut butter and then chocolate chips and chia seeds. Stir, then pour into greased 9x9" baking dish. Sprinkle extra chocolate chips on top.</span></span></div><div><span face="Sen, sans-serif"><span style="font-size: 18px;"><br /></span></span></div><div><span face="Sen, sans-serif"><span style="font-size: 18px;">Bake for 25-35 minutes or until looks set. Let cool for 10 minutes before serving.</span></span></div><div><div><br /></div></div></div></div></div>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-49938494141349882422024-02-06T12:25:00.002-05:002024-02-06T12:25:51.447-05:00Lupus lifestyle: Add the good stuff to your to-do list <p>I made a list of things to do this week - a combination of work stuff, home stuff, and things for the girls. Some tasks will require an hour or two of my time, or even several days to get through. Others, I'll accomplish in 10 minutes or less. </p><p>It's funny what I deem important enough to write down. "Replace light bulb" is on there, but so is "design website for re-launch". I see that my lists are a way to organize my time, but also remember the stuff I might forget, or motivate to do the things that I'm hesitant to tackle. </p><p>Actually, if I made a list of what I <i>want</i> to do, here's what it would look like:</p><p>"Sit by the fire and finish my book."</p><p>"Make a batch of mini chocolate chip cookies"</p><p>And probably "walk the dog."</p><p>That's it. </p><p>That's what I really want to do this week. </p><p>When I think about about this second list, I literally get a warm and cozy feeling inside. I smile. My skin tingles in that wonderful way that makes you charged with anticipation. </p><p>But there's so much other stuff that gets in the way. Stuff that definitely doesn't make me tingle. Prickle, maybe. Feel electrified, no. </p><p>So here's what I'm going to try this week. I'll keep the light bulb and the website redesign on the list, among other tasks. But I'm going to add the the walk, the cookies, and the fireside reading. I'll intersperse the good stuff in and among the not so fun. Or maybe it's the easy mingled with the hard. Or the quick with the long. </p><p>In any case, this week's list is going to include musts <i>and</i> wants. I'll let you know how it goes. The cookies are going to be quite the reward after accomplishing something on the list!</p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-86514527309852205402024-02-05T07:48:00.000-05:002024-02-05T07:48:00.196-05:00Lupus and Fatigue: Nap when you need to<p>Question - how far does sulking about a lupus symptom get you? </p><p>Answer - not very. </p><p>So while I'm not happy about my new morning fatigue, I'm not being stubborn about it. Or neglectful. Or unhealthy. </p><p>I am learning not to fight it. I am attempting to make it a part of my morning routine - booking appointments and scheduling calls around the fact that from 8:30-9:30a, I need to sleep. </p><p>I've had to rearrange plans and miss outings. I choose to dress differently most mornings, knowing that in just a couple of hours, I'll be back in bed napping. I treat my afternoons a little differently, too. I account for a later, shorter afternoon nap before school ends, and build in another 30 minute rest during the early evening. There isn't really any downtime, but I am working to create some. We are capable of amazing things when we have to be! </p><p>The hardest part has been the knock to my pride. I'm trying not to judge myself for crawling into bed not one, not two, but potentially three times per day. I try not to worry what my kids will think when I sneak upstairs for a quick break (is mom sick? why is she sleeping so much?) I try not to think of all the things NOT getting done during my multiple rests. Mainly, I try not to think about the naps as a step backward, as much as just a side step. This is a product of a schedule change, one that my body hasn't adjusted to, and that my mind hasn't accommodated for at night. (Go to sleep an hour earlier? Really? Is that even possible?) </p><p>But the system IS working. And I'm finding that after that first morning nap, I feel fresh and ready to accomplish. Stuff is getting done, and I'm not irresponsibly pushing through a lupus symptom, so currently, it's a win-win. </p><p>Next up: replanning my evenings so that an earlier bedtime becomes manageable. Consulting my previous posts about making changes. Here's one about <a href="https://despitelupus.blogspot.com/search?q=earlier">making incremental changes that add up</a>, and another about <a href="https://despitelupus.blogspot.com/2011/09/lupus-goal-setting-art-of-working.html">goal setting and how to move things earlier</a> (hint: you have to start waaaaay earlier than expected!) </p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-34705191458015916932024-02-03T08:42:00.001-05:002024-02-03T08:42:00.144-05:00Lupus and Fatigue: A new Schedule changes everything<p>I lied. </p><p>Back in December, I told you my fatigue rolls into town once a day, every afternoon. </p><p>I told you it's part of my daily routine, one that I have accepted and learned to embrace. <a href="https://despitelupus.blogspot.com/2023/12/lupus-and-sleep-dont-let-fatigue-win.html">Here's the post</a>. It's all true.</p><p>But what I wasn't <i>entirely</i> upfront about is how I feel about unexpected fatigue. The fatigue that hits mid-morning, or right after school, or again around 7pm. </p><p>The kind of fatigue that gets in the way. That upends my plans. That forces me to change how and when I do things. </p><p>That kind of fatigue is not welcomed here. </p><p>It makes me resentful. And annoyed. And disheartened. </p><p>These waves of fatigue haven't always happened. I had it under control for years. Every weekday, my alarm would go off at 6:45 am. I'd get up, take the girls to school, and come back to accomplish some combination of exercise, work, and errands. Around 12:45p, my internal alarm would sound, and I'd usher myself off for an (expected) afternoon nap. It was like clockwork - six hours after I woke up, I'd get sleepy. Even on the weekends, when I would sleep in. Six hours after I woke up, I'd be ready to nap. </p><p>But ever since Deirdre started high school in September, we've been getting up almost an hour earlier. And almost every day since, I've had to come home and take a morning siesta.</p><p>Not cool or convenient for a perfectly planned out morning like mine. </p><p>And then any sleep I do get in the morning throws off my afternoon nap. And then a later afternoon nap conflicts with school pickup, or after school activities. And when I don't get a full afternoon nap, dinner time and nighttime routines get complicated by fatigue. </p><p>So, no, I have not embraced my morning fatigue. I have not learned to live with it. </p><p>I am currently sulking. </p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-38120074114062971622024-02-02T07:00:00.002-05:002024-02-02T07:00:00.131-05:00Living with Lupus: MORE THINGS TO avoid<p style="text-align: left;"><span style="text-align: center;">Here's the last thing on my current list of things to avoid. But it's a biggie, so it gets its own post: </span></p><p style="text-align: left;"><span style="text-align: center;"> *Avoid thinking or talking about lupus (or an unrelenting symptom) every five minutes. </span></p><p>This isn't easy, I know. When lupus symptoms are negatively impacting every aspect of your life - it makes it pretty hard not to bring up all the time. But I speak from experience. Doing so doesn't make it go away. It doesn't make it less significant or less disruptive. </p><p>In fact, I'd say it makes it more problematic. </p><p>Here's what I wrote on my blog more than 14 years ago: </p><div><span style="background-color: white; font-family: Lora, serif;"><i>Oh, how I remember the constant (read: obsessive) visits to the bathroom to check the progress of my angioedema-ridden lips, a rash on my chest, or my swollen throat glands. It’s an awful feeling to know that your body is changing before your very eyes…and you can’t help but stay glued to a mirror so that you can track the transformation. I always thought it was helping my cause to visually monitor the progression…but you know what? My lips were going to swell whether I physically watched them double in size or not. It was out of my control, and the more I worried about it, the faster they’d swell (at least…that’s my opinion. I think my anxiety complicated the situation.) In fact, I found that the less I worried about them, the better. Once I realized that my lips were on their way to Botoxland, I’d make a pact with myself that I could only consult a mirror a certain number of times, like once an hour, or maybe two more times before bed. I did my best to take my mind off the swelling and that included visual confirmation. There was absolutely no benefit camping out in front of the mirror. It was bad karma, and it made me feel even worse about what was transpiring</i><span style="font-size: 14px;">.</span></span></div><p>Don't let anxiety get in the way. Don't let it fuel the symptom. Don't let it take over. Don't allow it to make lupus (or, say, your swollen lip) bigger than it already is. </p><p>Now listen - Yes, you need to mention your symptoms to your doctor. Yes, you should write them down in your symptom tracker. Yes, monitor them to make sure they're not getting worse every few hours or however often your doctor suggests. </p><p>But no, don't check to see what the swelling/rash/hives/hair loss looks like every chance you get. Don't talk about it to anyone and everyone who will listen. Don't drive yourself (and possibly those around you) crazy becoming obsessed with your symptom. </p><p>As I was talking to Deirdre the other night, I realized how this notion - allowing something to become bigger by constantly turning it over in your head - is so relevant during the teen years. Now it was time for me to pull from my years with lupus to help my sweet baby girl contain and shrink whatever was troubling her.</p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-1564161077970737632024-02-01T10:21:00.001-05:002024-02-01T10:21:08.199-05:00Living with Lupus: Make Lupus Small - Things to avoid<p>In the previous post, I talked about the things I can <i>do</i> to make lupus small. Just as important, though, are the things I can <i>avoid </i>to make the disease behave. </p><p>I know. I know. Most of us do better with positive directives - DO 10 min of exercise daily, DO eat 4-5 servings of vegetables and fruits. </p><p>But there's an interesting article in Psychology Today that explains the value of both positive and negative types of thinking, which you can read <a href="https://www.psychologytoday.com/us/blog/defining-memories/202304/how-to-balance-positive-and-negative-thinking">here</a>. I think it depends on the situation. </p><p>For instance, I personally like the sound of: </p><p>DO eat a piece of chocolate every night. </p><p>vs. </p><p>DON'T eat too much dessert. </p><p><br /></p><p>But sometimes I need to hear - </p><p>DON'T take your kids to the mall during your naptime </p><p>instead of trying to think </p><p>DO allow time to take a nap when planning a trip to the mall. </p><p>Know what I mean? </p><p>The DON'T is direct, and sounds almost like a warning, making me really sit up and listen. The DO, on the other hand, sounds more like a recommendation, a precautionary measure to consider, if and when convenient. </p><p>Here's my short list of things to AVOID: </p><p>*Avoid difficult people who need proof of your illness. </p><p>It's like blackmail - they're always going to want more, and it's not going to end well. Instead, find the people who accept you and your illness without question. The Doubting Thomas types might come around. Or they might not. But you will be well on your way surrounded by more supportive peeps. </p><p>*Avoid exhaustive explanations about lupus. </p><p>If someone doesn't get it, find someone who does. You can always loop back once the blockhead (did I just write that?) is more open to hearing what you have to say. </p><p><span style="text-align: center;">*Avoid doing things that make you flare. </span></p><p><span style="text-align: center;">Simple, right? Really, it kind of is. When my disease was active, I always flared after spending time in the sun. So I stopped. I used beach umbrellas, took breaks, sought out different times of the day to be outside, and temporarily dropped activities that caused me to be symptomatic. Same thing with cleaning the house: I can dust, I can clean bathrooms, I can do dishes, make the beds, and wipe down countertops. But mopping the floor and vacuuming are two tasks that always make my joints hurt. So I delegate. (Yes, I know we can't quit everything. But start with activities that are expendable, and go from there.) </span></p><p><span style="text-align: center;">Things to AVOID continued tomorrow! </span></p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-86828657438366158022024-01-26T11:26:00.000-05:002024-01-26T11:26:00.804-05:00Living with Lupus: Make It Small - Examples of things to do<p>As of this month, I've spent 23 years living alongside lupus. I've tried many ways to make our relationship "work" during that time - over 1500 blog posts worth of trial and error! </p><p>But it wasn't until I was talking with my oldest daughter Deirdre that I remembered a piece of advice that I keep coming back to. A bit of wisdom that continues to work for me, no matter what the situation. Probably because it gives me an active role in scenarios where I feel very much out of control. Here it is: </p><p style="text-align: center;"><b>Make lupus small. Make lupus, or whatever your personal difficulty, </b></p><p style="text-align: center;"><b>as smal</b><b>l as you possibly can. </b></p><p style="text-align: center;"><b><br /></b></p><p>Do this by concentrating on two areas: </p><p>1) Things you can do.</p><p>2) Things you can avoid. </p><p><br /></p><p>The goal is to simply make lupus, or whatever it may be, less. </p><p>Less significant. Less disruptive. Less present. </p><p>You want it to take up less space. In your mind. In your body. In the day. </p><p>But This doesn't mean I simply <i>will</i> lupus into be less painful. I don't just <i>think </i>it away. </p><p>I deliberately do things that make lupus less problematic and less symptomatic than it would have been if I'd done the opposite. </p><div>Examples, most of which I've already done at least once this week: </div><p>*Saying no when I've done too much already. </p><p>*Passing on coffee with friends if it conflicts with a nap.</p><p>*Rescheduling a work call when I'm too tired. </p><p>*Planning my day around an afternoon nap. </p><p>*Skipping my kid's sporting event if it's too taxing (i.e. too long of a commute conflicting with nap.) </p><p>*Distracting myself with things that don't pertain to my lupus symptoms (i.e. a new book.) </p><p>*Focusing on what I can do, not all the things I can't. </p><p>*Finding humor in the situation. </p><p>*Ordering dinner instead of making something when I'm bushed at the end of the day. </p><p>*Placing an order to have groceries delivered instead of going to the grocery store (hello, Instacart.) </p><p><br /></p><p>Next post - things I avoid! </p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-49476941908555848982023-12-18T08:40:00.000-05:002023-12-18T08:40:03.519-05:00Lupus and Sleep: A Christmas ditty<p style="text-align: center;"> O</p><p style="text-align: center;">nap of</p><p style="text-align: center;">mine, o nap </p><p style="text-align: center;">of mine. Why do you make </p><p style="text-align: center;">me so mad? O nap of mine, o</p><p style="text-align: center;">nap of mine. Why can't I just accept you?</p><p style="text-align: center;">You're only here to make me better; so I can</p><p style="text-align: center;"> sleep and feel refreshed. O nap of mine, o</p><p style="text-align: center;">nap of mine, </p><p style="text-align: center;">why do I resist</p><p style="text-align: center;">you so much? </p><p style="text-align: center;"><br /></p><p style="text-align: center;"><br /></p><p style="text-align: center;">(Sung to the tune of <i>O Christmas Tree</i>, aka <i>O Tannenbaum)</i></p><p style="text-align: center;"><br /></p><p style="text-align: center;"><br /></p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-91092188678674457022023-12-15T12:47:00.000-05:002023-12-15T12:47:01.525-05:00Lupus and Sleep: don't let the fatigue win<p>I live with lupus fatigue. </p><p>Not the crushing, debilitating fatigue I used to experience when my disease was active. You can read about that unrelenting exhaustion <a href="https://despitelupus.blogspot.com/2012/10/my-lupus-fatigue-defined.html">here</a>. </p><p>But rather, a fatigue that annoys and pesters, and won't go away until I give it what it wants - a decent nap. </p><p>Typically, the fatigue sets in around 1p, but I can sense it getting impatient by 12:45p. It ushers me to bed, appeased only when an eye mask, heated blanket, and white noise fan are involved. </p><p>Here are my napping guidelines: </p><p>If I allow an hour to nap, I wake up rested. </p><p>Less than an hour, the fatigue lingers.</p><p>Seventy five minutes? I don't hear from it again until the next afternoon. </p><p>Ninety minutes, and I am powered up and feeling productive. Watch out! </p><p>Even though it's inconvenient, a sufficient nap allows me to function normally for the remaining 14.5 - 15 waking hours of my day. </p><p>I did the math. It's a pretty good deal. </p><p>Factoring the nap into my daily schedule means it's less invasive or disruptive. Like I'm the one controlling the situation. </p><p>Not the fatigue.</p><p>I dictate the terms by taking my nap at about the same time every day. That prevents the fatigue from getting unbearable. And it allows me to confidently schedule the rest of my day. With a planned nap, I'm preventing the fatigue from overwhelming me when I least want it to. When I can't afford it. When I'm not expecting it. </p><p>Today, my nap is as predictable a routine as brushing my teeth. I do it everyday. I know it has to happen. I notice immediately if I try to skip. </p><p>So I never do. </p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-11763157981301824142023-12-14T08:33:00.001-05:002023-12-14T08:33:00.241-05:00Lupus and Sleep: Primed for Everything else<p>Sleep. </p><p>Probably the most important factor of the five that impact my health and wellness. </p><p>If I had to rank them, I'd go with: </p><p>Sleep</p><p>Medicine</p><p>Lifestyle</p><p>Nutrition</p><p>Exercise </p><p>But the ranking here is negligible. It's the way they work <i>together</i> that makes the difference. </p><p>Like sleep. Once I started getting more rest during the day and at night, I felt like my body was primed to let the medicine work its magic. With a rested body and mind, I could make better food choices. I felt like exercising. I could face the lifestyle choices I had to make with a level head, and not let guilt or FOMO get the best of me. I was recharged to live well with lupus - at least until the next nap. </p><p>Some days, I wish the secret to my wellness was something more dramatic. Or more complicated. Or at least not dependent on my own discipline. </p><p>Because it's hard to rest more than other people do. </p><p>It's embarrassing to step away from the daily grind, simply to nap...like a baby. </p><p>It can be challenging, time-consuming, disruptive, inconvenient, and costly, It can be offensive to people who don't understand. It can heartbreaking for those who do - because their sacrifice makes my nap possible. </p><p>But it's been lifesaving, too. </p><p>That's probably why it's ranked #1. </p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-13677507300696379112023-12-12T08:26:00.006-05:002023-12-12T08:26:00.125-05:00Lupus and Nutrition: Weighing the weight of sugar in my life<p>I have always loved dessert. </p><div dir="auto"><div dir="auto">Always.</div><div dir="auto"><br /></div><div dir="auto"><span style="font-family: inherit;">My mom signed my sister and me up for a private baking class when I was in elementary school. We would show up at Mrs South's house, her apron on, recipes laid out. She taught us how to make a buttery, flaky pie crust, and how to avoid a dry, crumbly quick bread. </span><div dir="auto"><span style="font-family: inherit;"><br /></span></div><div dir="auto"><span style="font-family: inherit;">From then on, baking became a hobby. I baked all throughout high school. I baked when I was home on break from college. I baked for co-workers, starting a company-wide baking contest at my first job. </span><span style="font-family: inherit;">My then boyfriend (now husband) and I created a Christmas cookie party tradition accepting homemade entries only that has lasted for the better part of 25 years. </span></div><div dir="auto"><span style="font-family: inherit;"> </span></div><div dir="auto"><span style="font-family: inherit;"><div dir="auto">I bake when I'm happy. I bake when I'm stressed. I don't bake when I'm sad. <span style="font-family: inherit;">But I do bake to comfort others. To express what I can't say in words. </span></div><div dir="auto"><br /></div></span></div><div dir="auto">It's no surprise that my love of baking grew into a love of sweets. </div><div dir="auto"><br /></div><div dir="auto">I always look at the dessert menu first, judging a restaurant by its final course. I have chocolate everyday. I seek out and silently critique bakery style chocolate chip cookies everywhere I go. </div><div dir="auto"><br /></div><div dir="auto">I never skip dessert. </div><div dir="auto"><br /></div><div dir="auto">But what if...I did? What if I just skipped it? What if I decided that dessert isn't essential?</div><div dir="auto"><br /></div><div dir="auto">That I can live without cookies. And cake. And muffins and ice cream and candy?</div><div dir="auto"><br /></div><div dir="auto">That I can still be a great baker, a curious baker, without eating dessert all the time? Or even most of the time? </div><div dir="auto"><br /></div><div dir="auto">Those are the questions I've been asking myself lately. </div><div dir="auto"><br /></div><div dir="auto">And I think I'm on to something. </div><div dir="auto"><br /></div></div></div>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-42044140565342341752023-12-07T16:53:00.002-05:002023-12-07T16:53:40.681-05:00Lupus and Nutrition: My favorite Protein Oatmeal Bites<p>Here's a recipe that makes me feel good - Protein Oatmeal Bites. </p><p>So good. So filling. So full of protein.</p><p>Two of these in the morning with a cup of tea sets me off in the right direction. A sensible lunch, plus another one of these as an after school snack along with some fruit gets me through until dinner. </p><p>My kids consider them a good go-to for breakfast, a snack, or as dessert. With just 1 1/2 Tablespoons of brown sugar in the whole batch, that makes me pretty happy! </p><p>Here's the recipe. If I can find the original owner, I will update to give credit! </p><p><u>Delicious Protein Oatmeal Bites</u></p><p>1 1/4 cup oats</p><p>1/2 teaspoon baking powder</p><p>1/2 teaspoon cinnamon</p><p>1 egg</p><p>2 Tablespoons melted coconut oil (or olive oil)</p><p>1 1/2 Tablespoons brown sugar</p><p>1/2 teaspoon vanilla</p><p>1 Tablespoon chia seeds (I sprinkle a little extra in there)</p><p>1 Tablespoon flax seed</p><p>2 Tablespoons peanut butter </p><p>1/4 -1/2 c chocolate chips</p><p>Preheat oven to 350 degrees.</p><p>Mix all ingredients in mixing bowl. </p><p>Using a cookie scoop, drop mixture onto cookie sheet. You can also shape into balls and flatten. </p><p>Bake 10 min. Enjoy!</p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-63399236291970705702023-12-06T17:43:00.001-05:002023-12-06T17:43:00.130-05:00Lupus and Nutrition - What foods make your body work the best? <p>Nutrition. One of my favorite subjects when it comes to living well.</p><p>Not because I discovered the perfect "lupus diet", unfortunately. If only there was one!</p><p>And it's not because what I choose to eat syncs up perfectly with what my body needs. 90% of the time, sure. But that other 10% can cause...we'll call it "trouble". </p><p>It's primarily because, of the five factors I've focused on over the years - nutrition, exercise, medicine, lifestyle and sleep - I've been able to experiment the most with my diet. I can see and feel the results almost immediately. So satisfying to get feedback quickly! </p><p>It hasn't always been quite so easy. When my symptoms were active, and joint pain, joint swelling, low energy, fatigue, and digestive issues were everyday occurrences, it was hard to isolate what foods were impacting which symptoms. I wrote <a href="https://despitelupus.blogspot.com/2021/01/food-allergies-and-lupus-angioedema.html">a previous post here talking about my past food and drink allergies</a>.</p><p>Over the years, here's what I've tried or am currently trying: </p><p>Cutting down on pasta. Cutting down on bread. Cutting out dairy. Incorporating dairy back in. Eliminating just milk. Cutting out meat. Incorporating meat back in. Trying a protein heavy diet. Trying a not so heavy protein diet. Cutting out nightshade vegetables. Cutting out arugula, basil, and spinach. Cutting out all fresh herbs. Incorporating herbs and lettuces back in. Cutting out alcohol. Incorporating alcohol back in. Cutting out only wine. Cutting out only red wine. Cutting out oats. Cutting out apples. Cutting down on sugar. Cutting out sugar. Cutting down on sugar, but cutting out dessert. Drinking primarily orange juice. Cutting out orange juice. Cutting out soda. Cutting out caffeine. Cutting out only coffee. Cutting out decaf coffee. Cutting out watermelon. Cutting down on watermelon. And I'm sure the list goes on! </p><p>It can be exhausting trying and tracking different combinations of foods/beverages. But when an elimination attempt (partial or full) yields positive results - and a symptom disappears - all that's left is satisfaction! </p><p>Today, I continue to pay attention to the foods that work best with my system. Not just for lupus symptom control, but to feel good overall. That's the question I continue to ask myself - what foods make you feel the best? </p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-73531854143528427252023-12-05T12:00:00.001-05:002023-12-05T12:30:15.085-05:00Living Well with Lupus: 5 Factors to Focus on<p><span style="background-color: white; font-family: Lora, serif; font-size: 16px;">Years ago, someone asked me to list the changes I'd made since becoming a parent. </span></p><p><span style="background-color: white; font-family: Lora, serif; font-size: 16px;">How was I caring for my baby <i>and</i> accommodating my illness? What factors were keeping me healthy? </span><span style="background-color: white; font-family: Lora, serif; font-size: 16px;">How was I remaining flare-free?</span></p><p><span style="background-color: white; font-family: Lora, serif; font-size: 16px;">That was 15 years ago, and the list I came up with then still works for me now. </span><a href="https://despitelupus.blogspot.com/2009/10/happy-birthday-deerdeepants.html" style="font-family: Lora, serif; font-size: 16px;">You can read the whole list here</a>, but n<span style="background-color: white; font-family: Lora, serif; font-size: 16px;">umber four may be the most important. Keep in mind Deirdre (now 15) was less than a year old at the time: </span><span style="background-color: white; font-family: Lora, serif; font-size: 16px;"> </span></p><p style="text-align: left;"><i><strong style="background-color: white; font-family: Lora, serif; font-size: 16px;">#4 - Do what you must to stay well, no exceptions:</strong><span style="background-color: white; font-family: Lora, serif; font-size: 16px;"> </span></i></p><p style="text-align: left;"><i><span style="background-color: white; font-family: Lora, serif; font-size: 16px;">There's nothing more </span><span style="background-color: white; font-family: Lora, serif; font-size: 16px;">important than staying well - if not for yourself, then for that little munchkin who's counting on you. I've talked to many people who are so proud of themselves for staying healthy. And you know what? We SHOULD be proud. It takes a lot of <b>work, effort, and discipline</b>. And we're <u>choosing</u> to live well. We really are. I know lupus is unpredictable, and mysterious, and evasive. But <b>there are choices we can make that help us stay one step ahead of the disease.</b> Those choices aren't always easy, and they aren't </span><span class="blsp-spelling-error" id="SPELLING_ERROR_6" style="background-color: white; font-family: Lora, serif; font-size: 16px;">always</span><span style="background-color: white; font-family: Lora, serif; font-size: 16px;"> convenient...but for my little lady - what wouldn't I do? </span></i></p><p><span style="background-color: white; font-family: Lora, serif; font-size: 16px;">***</span></p><p>The choices I make to stay healthy. </p><p>The steps I take to keep my symptoms minimal and my flares rare. </p><p>This is what I want to write about.</p><p>After almost 23 years with lupus, why not share what's working? </p><p>It feels fantastic to have come this far in my journey with lupus. Most of the daily decisions I make don't feel like accommodations or sacrifices anymore. </p><p>They just feel...right. Like I'm supposed to be living this way. Healthy, happy, healed. </p><p>Living well. On purpose. </p><p>While it's been a combination of factors that has kept my lupus activity at bay, here are the areas I've focused on over the years: </p><p>*nutrition </p><p>*exercise </p><p>*sleep </p><p>**medicine </p><p>*lifestyle</p><p>Striking the right balance in all of these areas has required trial and error. </p><p>Experimentation. </p><p>Practice.</p><p>Sacrifice. </p><p>Sometimes, what my body tells me it needs isn't always what I want to hear. </p><p>And I don't always do - or eat - or skip -what I should. </p><p>But I try. </p><p>I'm not perfect. But I am purposeful. </p><p>The work, effort, and discipline I talked about almost 15 years ago in #4? </p><p>It's worth it. </p><p><br /></p><p>**Note that I never "experimented" with my medicine without my doctor's consent. I always recommend working closely with your doctor before making any changes to your medication regimen. That's part of what's kept me healthy! </p><p><br /></p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-86417338233270345262023-12-01T11:01:00.001-05:002023-12-01T14:33:29.494-05:00Lupus and Caregiving: Finding Purpose Again<p>It's been a year since my mom passed - four years for my dad. Both from cancer. </p><p>Since then, I've been...unsettled. </p><p>Not sad. Not stuck. Just searching. Searching for a way forward. </p><p>Searching, I think, for a purpose. </p><p>When my parents moved into our home so we could take care of them, my girls were only 7 and 9. The kids were old enough to tie their own shoes and make a piece of toast, for example, but my daily involvement in their lives was still significant. </p><p>I <i>told</i> them when to put their shoes on, and they <i>asked</i> if they could have the toast. </p><p>My parents needed daily caregiving, too, so my load was heavy. But I learned to embrace it. I came to appreciate it. The juggle, some days, struggle, gave me purpose. </p><p>Fast forward a few years, and I've lost both my parents - </p><p>And gained two teenagers. </p><p>The girls grew into independent, responsible, beautiful young ladies, all while I was tending to their grandparents. Today, they are fully capable of doing many things - most of which are way beyond making toast. </p><p>The kids don't need me the way they used to. I'm still adjusting to the time they want alone. To the time they prefer to be with friends. To the times when I am, seemingly, without purpose. </p><p>But I'm beginning to understand. They don't need me as often, but they need me <i>more</i>. </p><p>They need more of <i>me</i>. </p><p>Of who I am. </p><p>Of how I came to be me. </p><p>Of how they are going to become themselves. </p><p>They are growing, changing, feeling, thinking - often, for what seems like the very first time. The decisions they're making now are life changing. Important. Lasting.</p><p>Decisions that have purpose. </p><p>And they're asking me to help in the process. </p><p>Purpose, indeed.</p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-27408115628986060222023-11-30T10:37:00.003-05:002023-11-30T10:37:51.223-05:00Lupus and Caregiving: What happens next? <p style="text-align: center;"> Caregiving. </p><p style="text-align: center;">Giving care to someone in need. </p><p style="text-align: center;">Someone who needs you. </p><p style="text-align: center;">Making you feel </p><p style="text-align: center;">needed. </p><p style="text-align: center;">Giving you </p><p style="text-align: center;">purpose. </p><p style="text-align: center;"><br /></p><p style="text-align: center;">But what happens, </p><p style="text-align: center;">I wonder, </p><p style="text-align: center;">after the care is no longer needed?</p><p style="text-align: center;">What becomes of the caregiver? </p><p style="text-align: center;">Where is the need then? </p><p style="text-align: center;">What about the</p><p style="text-align: center;">purpose? </p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-55953075008681665462023-11-29T15:18:00.002-05:002023-11-29T15:18:25.152-05:00Living Well with Lupus: Little Changes, Big Impact<p>Little changes that make a big difference. </p><p>I call them baby steps. </p><p>Some years, especially when lupus was in full force, I took <i>literal </i>baby steps - taking one painful step after another, out of bed, down the stairs, or out the door. </p><p>Other times, the small steps were more like mini-adjustments to daily life: </p><p>A request to reduce my work schedule by an hour. </p><p>A commitment to have my groceries delivered once a week. </p><p>An arrangement for a school carpool, because dismissal conflicted with my nap. </p><p>Little changes work in two ways. They make things better. And they build momentum. You not only experience an immediate benefit, you feel compelled to keep the positive results flowing. You succeed a little bit. Now you want to succeed again. </p><p>The most recent baby step I've made? Moving Instagram off of my phone's home screen. Can I just say life-altering?</p><p>Like, literally. The time I was wasting on the app was reduced by 70%. The folks who coined the phrase "out of sight, out of mind" were definitely on to something. </p><p>Equally as recent was my baby step to cut out dessert. Holy moly, are my pants fitting better! And that's just after 10 days. </p><p>I can't believe how much dessert I must have been eating, without really eating dessert. A handful of chocolate chips here, some banana bread there. Apparently, it adds up. </p><p>You can read about my past <a href="https://despitelupus.blogspot.com/search?q=baby+steps">baby step successes here.</a> But my next endeavor involves the whole family. Working on less screen time. What better season to increase face-to-face interaction than Christmas, right? </p><p>Wish me luck. I can only promise my family the result of better fitting pants because we won't be carrying our phones everywhere. </p><p>That's pretty bad. I think I need to baby step how I'm going to sell this baby step! </p><p><br /></p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-10660083433153479672023-11-28T08:29:00.000-05:002023-11-28T08:29:01.837-05:00Living Well with Lupus: Finding a way Forward<p>I just finished a book that inspired me to write again. </p><p>It wasn't a motivational book.</p><p>And it wasn't a book about writing. </p><p>But it was about moving forward. And about moving on after loss. </p><p>And about having hope. </p><p>It was written in vignettes - little snippets of the author's life doled out page by page that together, told a story. Her story. </p><p>And that spoke to me. </p><p>I remembered how much I enjoy sharing my story - the successes, the sidesteps, the revelations, and the discoveries. Divulging parts of my life allows me to reflect and grow, helps me to heal and thrive. </p><p>So let me begin again. </p><p>I'm Sara Gorman, and this is my blog. </p><p>Welcome. </p><p><br /></p><p><br /></p><p><br /></p><p><br /></p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-39239692001416005912023-03-07T12:46:00.005-05:002023-03-07T12:46:58.081-05:00Lupus and Vitamin D: Symptom of Vertigo is no joke! <p>Vitamin D Deficiency. Do you know much about it? </p><p>I didn't, either, despite the fact that I've <a href="http://despitelupus.blogspot.com/search?q=vitamin+d">blogged about Vitamin D frequently on this blog</a>!</p><p>But that's where I left off, after posting about <a href="http://despitelupus.blogspot.com/2023/01/lupus-and-your-doctor-starting-over.html">my first appointment with my new rheumatologist</a> last month, and her discovering a deficiency in my vitamin D levels. I've been tested and treated periodically before, but I'm glad she caught it this time. I am fairly certain the events of the last few weeks had everything to do with my lack of Vitamin D! </p><p>(Note: My new doctor ran a TON of labs, to the tune of $2000, $900 of which my insurance won't cover. That's a another blog post entirely - so here, I'll just be thankful that the tests resulted in finding something that needed attention.) </p><p>Here's how things unfolded: </p><p>My doctor's office called within a few days of my appointment to prescribe a vitamin D supplement.</p><p>A week after my appointment, I found time to get the store to pick up the OTC vitamin D. I started the capsules the same day </p><p>The following Monday, I started experiencing symptoms of Vertigo - not only moments of dizziness, but 5-10 secs where it felt like everything was spinning. I had to stop, stay still, hold my head, close my eyes, and wait for it to subside. It occurred once or twice daily for a couple of days, and I considered possible causes: my period, which had just started, my low weight, which I'd mentioned to the doc, or maybe even my history of low iron (I've been anemic ever since lupus arrived.) </p><p>I decided to monitor it, and over the course of the week, the bouts of vertigo continued and increased. By the end of that first week, I was experiencing 10 second bouts of spinning, multiple times a day. </p><p>I broadened the list of possible causes, and started tracking what I was eating and drinking, and how I was moving. Was it exercise? Low blood pressure? Dehydration? Getting up too fast? Too little protein? </p><p>Before I could get a call in to the doctor, I went on vacation for four days, and the bouts of vertigo continued. I think it was about this time that I looked up Vitamin D and Vertigo in Google. </p><p>Bingo. </p><p>The link was quite clear between a lack of the vitamin and the symptom. </p><p>I swear I'd looked it up before, when the doctor had called about the deficiency to begin with, but I hadn't actually typed in those two words together, because at that point, I hadn't experienced the vertigo. My search was more like - "symptoms of vitamin D deficiency" - and none of them included vertigo. </p><p>Now that I was pretty sure I knew the cause, I waited a few days to call the doc. By the time I placed the call, it was a Friday, and little did I know, my doc's office is closed on Fridays (which is another post as well. Who's closed on Fridays??!) </p><p>I put a reminder in my calendar for Monday to phone the office first thing when it opened, but over the weekend, the symptoms subsided. By Monday, no vertigo. No nothing. It was such a relief! </p><p>I'll be sure to share my experience with my doctor at my next appointment. It will be interesting to hear her thoughts, and whether that was truly the cause. (I'm trying not to play Dr. Internet, here.) </p><p>Any thoughts on vitamin deficiency - please share. I'm going to start paying more attention! </p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-85162993778227443382023-02-01T12:26:00.002-05:002023-02-01T12:26:53.673-05:00Lupus and Sleep: Could I be phasing out my daily nap? <p>My afternoon nap. It has been a staple in my daily routine ever since I finished my week-long hospital stay due to lupus-induced pancreatitis almost 20 years. That bout of illness was quite the wake up call - the blood transfusions and the near 20lb weight loss alone were enough for me to declare that some things in my life had to give. The first was my job - the stress, long hours, and demanding workload weren't compatible with lupus. You can read more about that <a href="https://despitelupus.blogspot.com/2021/03/lupus-accommodations-giving-in-isnt.html">here</a> and <a href="https://despitelupus.blogspot.com/search?q=retire">here</a>. The second was my fatigue. I was barely making it until 5pm before running out of steam. I'd drive home from work, collapse into bed, not to awaken until my alarm went off the next morning. I. Was. Spent. So in an effort to the manage my daily fatigue, I inserted an<a href="https://despitelupus.blogspot.com/search?q=nap"> afternoon nap</a>. And it stuck. </p><p>For almost 20 years, I've been scheduling my life around my daily afternoon nap. Work calls, social engagements, errands, school pickup, vacations, flights for vacations, holiday get-togethers - literally every single day involved scheduling my day's events around my nap. Taking a nap mid-day comes naturally at this point: I typically feel the fatigue come on anywhere between 12p-2pm (depending on how much sleep I've had and what time I wake up), and then I fall right asleep for an hour or two. I wake up rested and refreshed. If I go much past 2pm to begin my nap, I am a mess. Bleary eyed, cranky, withdrawn - my family knows the signs, and often ushers me off to sleep. </p><p>But over this past Christmas break, something crazy happened. There were two days when I simply didn't get tired. No fatigue at all. Nothing. Zilch. Zero. It was so bizarre, and completely unexpected. The first day it happened, I'd been running errands in the morning, but headed home at 12pm, as usual, to prepare to take my nap. I got home, touched base with my family, and noticed that the wave of overwhelming fatigue hadn't hit yet. One o'clock came and went, two o'clock came, and I still felt fresh and awake as ever. I kept tabs on my condition, and the hours just passed by, and I continued to feel fantastic. My eyes weren't glazed over, I wasn't struggling with my speech, and I was in a good mood - not the fatigued, crumpled mess I usually find myself in when I push back my nap. Before long, I found myself with plenty of energy to make dinner, stay up for a family movie night, and by 10pm, was still feeling great. I really don't know what came over me. </p><p>It. Was. Fantastic. </p><p>Since then, I've experienced that same level of energy one other afternoon. Again, felt zero fatigue, had energy to spare, and was able to make the most of my nap-free day. I stayed up until after 10pm, suffering no effects from a napless day. </p><p>There was a third day when I thought, "Oh my gosh. This is it. It's happening again. I'm actually phasing out my daily nap", only to find that a little after 4:30p, the fatigue finally hit. I slept from 5-6:30pm, and just tried to focus on the fact that I'd gotten that far without the nap. </p><p>Since those three days, it's been back to normal. I wake up each morning completed rested, do my thing, get to about 12-1pm, and need a nap. I do find that I can manage with just an hour most days. But just last week, I took a two hour nap from 11-1pm, and the week before that, I ended up sleeping for two and a half hours. Go figure! </p><p>I have yet to pinpoint the factors that might be contributing to those days where I feel fully rested all day long. I'm keeping an eye out for the total amount of sleep I get, day and night combined, the time I wake up in the morning, the food I'm eating, my level of daily exercise, my stress levels, and anything else that might make a difference. I'm not going <i>crazy</i> trying to figure it out. I'm just super duper excited that the possibility is out there. I've heard that as one approaches menopause, some women with lupus have experienced a significant decrease in symptom activity. I'm not quite there yet (neither menopause nor symptom reprieve!), but I am definitely hopeful. This article from <a href="https://lupus.newlifeoutlook.com/lupus-and-menopause/">New Life Outlook Lupus</a> was a good resource, and I look forward to following along her journey, too! </p><p>Have experience aging gracefully (and successfully) with lupus? All comments are appreciated! </p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-39969988270913933572023-01-26T20:47:00.000-05:002023-01-26T20:47:05.216-05:00Lupus And Your Doctor: Starting over with a new doctor and Developing the Doctor/Patient Relationship<p>Where to begin? </p>
<p class="MsoNormal">It’s been awhile, and while I’d like to fill in the details
since I last wrote, I’m not ready yet. I thought I was when I sat down to write,
but now, I’m not. So I think the easiest way to begin is to start with the
present, and work backwards. But I have a lot of fun things to focus on already
in 2023 and I’m anxious to share, so let’s get started with blog post #1! <o:p></o:p></p>
<p class="MsoNormal">Biggest news in my life with lupus is that I started with a
new rheumatologist, after spending more than 22 years with my beloved Dr. Stahl, who
retired in the fall. He was known as Dr.
S in my book, and I practically dedicated a whole chapter to him, or rather, to
the effective doctor/patient relationship that we cultivated over the years. The chapter was titled, “What’s Up, Doc”, and
to this day, it’s one of the chapters in “Despite Lupus” that prompts the most
questions. “How did you get your doctor to listen?”, “How did you have time to
tell him everything?”, or “How did you even know <i>what</i> to tell him?” The
answers, while relatively simple, take some work, but definitely get easier
over time. The strategies I’ve used are sprinkled throughout the chapter, but
also on my blog. This <a href="http://despitelupus.blogspot.com/2013/02/if-you-dont-ask-you-wont-know-applying.html?m=1">past post </a>and this <a href="http://despitelupus.blogspot.com/2013/01/listen-up-doc-webinar-with-sle-lupus.html?m=1">earlier post</a> really highlight the keys
I found to fostering a great doctor/patient relationship. And not only was it a
great relationship, but a constructive one that brought me health, wellness,
and healing.</p>
<p class="MsoNormal">I definitely plan on applying all the same tactics with my new
doctor, and prepared a few things in advance of my first appointment to highlight. I
made notes about my <a href="http://despitelupus.blogspot.com/search?q=nap">napping over the years,</a> my <a href="https://simplyhealth.today/14-causes-of-raynauds-disease/?utm_source=%2Braynaud%27s&utm_medium=14CausesofRaynaud%27sDisease&utm_campaign=adw_us&msclkid=31f9d23e0a651fee9a8db1ed2367645f">Raynaud’s</a>, my <a href="http://despitelupus.blogspot.com/search?q=cellcept">history onCellCept</a>, and then any new symptoms I was experiencing, like my recent, though minor,
weight loss. The weight loss is most likely due to the experience of caring for my sweet mom
last year (See? Opening up already…), but I figured it was worth pointing out
because this new doc, Dr. T, might not know
that I never fluctuate in my weight…unless I’m sick, or apparently under stress.
But little did I know that Dr. T would need a FULL, 20 year, health history. Turns out
Dr. S had exactly four entries in my file from the last 22 years. Four! Can you
believe it?</p><p class="MsoNormal">Before we all judge, it’s important to consider that Dr. S. had his
own practice for 21 of those 22 years, and he never converted to EMR
(electronic medical records). So when he closed his practice and moved into
this new one, he made short notes about each patient he brought over and those
are what were entered in electronically. Technically, all of my history is
available – but only three summarizing notes made it to the EMR from my early years
with lupus. The fourth entry was from my last visit – and he had everything in
there – about my mom, about our discussion about seeing an ophthalmologist if
my blood shot eye didn’t resolve (which it did), about my urinalysis results,
etc. So new Dr. T wanted to hear it all – and I actually had a hard time
filling in the blanks! It’s been so long since I’ve told my lupus diagnosis
story – I actually found myself mentally going through popular blog posts to
remember all my ups and downs! Biopsies, lung taps, lupus-induced pancreatitis,
blood transfusions, joint pain, swelling, pleural effusion, pericarditis,
photosensitivity – I tried my best. I ended up forgetting to tell her about <a href="http://despitelupus.blogspot.com/search?q=hair+loss">hair loss </a>(duh!), and about <a href="http://despitelupus.blogspot.com/2010/03/giving-in-isnt-giving-up.html">leaving my full time job because of my health</a>
(double duh!), but there's time for that. As I said, developing the doctor/patient relationship takes
time. I already have both hair loss and quitting my job on my list for the next
appointment, and I’m sure I’ll be adding more over the course of the next few
weeks. Her office already called post-appointment and said I’m low in Vitamin D and made a
prescription change, so I love that she’s proactive about lab results. I think
we’re going to get along just fine. (And the fact that she’s younger than I am
makes me think she won’t be retiring any time soon!)</p><p class="MsoNormal"><o:p></o:p></p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0tag:blogger.com,1999:blog-8824828113983189391.post-18818905603944316902022-11-16T20:09:00.005-05:002022-11-16T23:00:44.551-05:00Lupus and Caregiving: Managing the Decline of a Loved One<p>We got extra time. </p><p><span face="calibri, sans-serif" style="background-color: white; color: #500050; font-size: 14.6667px;">There's really no other way to say it.</span></p><p><span face="calibri, sans-serif" style="background-color: white; color: #500050; font-size: 14.6667px;">Back on Sept 15th, we were told by hospice that my mom had 1 to 2 weeks to live. We should start preparing for her passing. We started going day by day, moment by moment. </span></p><p><span face="calibri, sans-serif" style="background-color: white; color: #500050; font-size: 14.6667px;">But a month later, October 15th, she was stable and stronger than ever. Turns out, she improved tremendously on the palliative care hospice was able to provide. We were thrilled. </span></p><p><span style="color: #500050;"><span style="background-color: white; font-size: 14.6667px;">A week after that, October 22nd, she was showing signs that she was within days to a week of passing. </span></span></p><p><span style="color: #500050;"><span style="background-color: white; font-size: 14.6667px;">Again, she rallied. As of her birthday on November 7th, she was doing well - well enough to enjoy a slice of her own birthday cake. </span></span></p><p><span style="color: #500050;"><span style="background-color: white; font-size: 14.6667px;">But today, November 16th, is different. </span></span></p><p><span style="color: #500050;"><span style="background-color: white; font-size: 14.6667px;">Today, we know she won't be rallying. We are close. Very close. And I'm just thankful for the extra two months we've had. </span></span></p><p><span face="calibri, sans-serif" style="background-color: white; color: #500050; font-size: 14.6667px;">What have I learned? I've learned not to</span><span style="background-color: white;"><span style="color: #500050;"><span style="font-size: 14.6667px;"> worry too much about the timeframe. It seemed to be a moving target every time one would be declared, so I decided it wasn't an accurate gauge anyway. Instead, I tried to simply focus on and enjoy every visit I had. Most days, it worked. </span></span></span></p><p><span style="background-color: white;"><span style="color: #500050;"><span style="font-size: 14.6667px;">At the same time I was appreciating each visit, I tried to resist the urge to judge her progress every time I'd see her. I tried not to get my hopes up after the good visits, and not dwell on the dismal outlook after the not-so-good ones. </span></span></span></p><p><span style="background-color: white;"><span style="color: #500050;"><span style="font-size: 14.6667px;">In fact, I found it most productive to zoom out, and assess her situation over the course of several days. In the beginning, we could look at a 7- 10 day period. How was she doing as a whole during that time? Improving, declining, or staying about the same? Once there was marked decline, I started looking at how she was doing every 5-7 days as a whole, and then every 3-5 days. As things progressed, we began to look day to day. </span></span></span></p><p><span style="background-color: white;"><span style="color: #500050;"><span style="font-size: 14.6667px;">And now, just moment by moment.</span></span></span></p><p>So as difficult as this is as a whole, the moments are manageable. So back we go. Moment by each beautiful moment with my beautiful, wonderful mom. </p><p>Lord, let me be thankful for this moment. </p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com2tag:blogger.com,1999:blog-8824828113983189391.post-29918026996087046742022-11-08T11:01:00.000-05:002022-11-08T11:01:04.398-05:00Lupus and Caregiving: Taking time to Transition <p><span face="Arial, Helvetica, sans-serif" style="background-color: white; font-size: small;">Let's talk transition time. </span></p><p><span face="Arial, Helvetica, sans-serif" style="background-color: white; font-size: small;"><span face="Arial, Helvetica, sans-serif" style="font-size: small;">I visit my mom almost every weekday morning. I stay between 1-3 hours, and the routine varies.</span></span><span style="background-color: white;"> </span></p><p><span style="background-color: white;">Some days, I'm helping with bathing, feeding, changing, dressing, or tidying up.</span></p><p><span style="background-color: white;">Other days, I meet</span><span style="background-color: white;"> up with the nurse for a 3x a week draining procedure (<a href="http://despitelupus.blogspot.com/2022/09/lupus-and-caregiving-whole-new.html?m=1">read about why my mom needed a P</a></span><span style="background-color: white;"><a href="http://despitelupus.blogspot.com/2022/09/lupus-and-caregiving-whole-new.html?m=1">leurX drain here</a>), and discuss disease progression, medications, etc. </span></p><p><span style="background-color: white;">Sometimes, my mom and I just talk before or after the morning duties. Or we watch TV (though not as much as we used to). Or I sit on the side of her bed, and we hold hands while she rests. Or I just sit quietly in the corner. </span></p><p><span style="background-color: white;">Most days, regardless of what I've done, I'm an emotional wreck on the way home. Sometimes, they're happy tears, because she's doing so well, or because the new medicine is working. Other days, it's frustration overload because of the unpredictability of her advanced staged illness. I cry when I'm sad, overwhelmed, or weary, but also when I'm happy or relieved. It made we think about what's happening when we cry. So I googled it. </span></p><p><span style="background-color: white;"><span face="Roboto, "Helvetica Neue", Arial, sans-serif" style="color: #4d5156; font-size: 18px;"><i>Google search: Why do people cry? </i></span></span></p><i>Tears arise from strong emotions. Empathy, compassion, physical pain, attachment pain, and moral and sentimental emotions can trigger these tears. They communicate your emotions to others. Emotional tears make you feel more vulnerable, which could improve your relationships. Emotional tears contain more <a href="https://www.webmd.com/balance/stress-management/default.htm">stress</a> hormones and natural painkillers than other types of tears. They serve a therapeutic role, also known as “a good cry.” Emotional crying, which tends to make you feel better, may be a part of the healing process. </i><p><span style="background-color: white;">Yes! 100%! Exactly what they said! </span></p><p><span face="Arial, Helvetica, sans-serif" style="font-size: small;"><span face="Arial, Helvetica, sans-serif" style="font-size: small;">Which leads to my point about transition time. No matter what the morning entails, I need time to transition once I arrive home before I tackle pretty much anything of substance. Walks are good, naps are even better. </span><span face="Arial, Helvetica, sans-serif" style="color: #222222; font-size: small;"> Sometimes washing the dishes, brushing my dog Tia, or blowing leaves does the trick. But I can't underestimate the value of this downtime. It serves as a way to transition from a very difficult scenario back to reality. My mom is passing from this life to the next. And it's hard. It's hard to let go. It's hard to part ways. It's hard to watch her become a shell of who she was. And it's really hard knowing that one day, I'll drive back from her place for the very last time.</span></span></p><p><span style="color: #222222;">I don't dwell on the last one very often. But it's exactly why I can't skip that transition time. The reality is that my life here on earth will go on even when my mom's has come to an end. </span></p><p>And I usually need a minute to make sense of that. </p><p>Have you found ways to transition from caregiving to the routine of your own life? Let me know in the comments! </p>Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.com0